Iatrogenic endometriosis - a cesarean risk

What it is

What is Iatrogenic Endometriosis?

Iatrogenic endometriosis is a form of endometriosis which is caused by any uterine surgery, in most cases a cesarean section. Iatrogenic “originating from a physician” endometriosis is a preventable condition in women with no concomitant pelvic endometriosis. An endometrioma mass in the incisional scar and in the abdominal wall following a cesarean section is the result of the direct implantation of the endometrium tissue (uterus lining) outside the uterus. Iatrogenic endometriosis and is a well-established entity by itself known to the medical field.

How do these endometrium tissue cells get transferred?

During a cesarean section surgery an incision is made to the abdomen and into the uterus then the new born is lifted out through the abdomen. This may cause the endometrial tissue to become dislodged from the endometrium (uterus lining) and it could easily be implanted outside the uterus in the pelvic, abdominal wall cavity, abdominal rectus muscle and along the incision scar. The lack of secure closure of the parietal and visceral peritoneum during cesarean section and reduced care to avoid dissemination of endometrial cells may also be associated with endometriosis at the surgical scar.

Endometrium Function

From puberty to the menopause the endometrium is subject to cyclic changes under the influence of the same hormones that regulate ovulation. Endometrium tissue cells (uterus lining) renew monthly, as part of the reproductive cycle. The body builds up a dense layer of tissue which could support a fetus, and if a woman is not impregnated, it is shed and exits the body in the form of a menstrual cycle.

How do these misplaced cells thrive outside the uterus?

Outside the uterus, endometrium tissue cells respond to female hormones in-synced with the lining of the uterus. However, during each menstrual cycle, external endometrium tissue cells are shed and have no way of exiting the body. They become trapped and each month growing forming a mass and attaching to any surrounding organs. Overtime they become lesions that form nerves tying themselves into the central nervous system. Incisional endometriosis is progressive disease; symptoms and pain get worse over time as the mass grows.

Symptoms

Depending on the location of the mass and the female “host” hormones, symptoms might be different for all iatrogenic endometriosis suffers. Growths of endometriosis masses are benign (not cancerous). But they still can cause many problems for much different reasons. Endometriosis tends to be a progressive disease, which means that symptoms usually get worse over time as the mass grows. In my case the symptoms started right after my cesarean section and progressed with time. I would compare the pain experienced monthly as intense as passing kidney stones (a pain that is described by many being worse than child birth).

The list of symptoms I experienced after the cesarean while the mass was growing:

Continuous:

Lump above cesarean incision scar, a slow growing mass, painful and tender to the touch with time

Abdominal and surrounding area inflammation

Abdominal swelling and bloating

Constant lower back pain

Sciatica pain

Abdominal pain and or discomfort when coughing or sneezing

Discomfort when doing any type of activity using core muscles

Cramping of abdomen rectus muscle

Overall weakness of abdominal muscles

Denser and tender breast

Weight gain

Cystic acne

Other unexplained discomfort in the surrounding area caused by nerve cells

During menstrual cycle and follicular phase:

Lower abdominal aching, dull, sharp pain that starts few days before menstrual and intensify few days after menstrual cycle

Internal heat during menstrual and follicular phase around the lump in abdomen area

Intense cramps in the abdominal muscle during menstrual cycle and follicular phase

Periodic sharp stabbing pain in the muscle during menstrual and it intensifies during follicular phase

Lower back and hips radiating pain during menstrual cycle and it intensifies during follicular phase

Itching of the lower abdomen area that would start during menstrual cycle and intensifies after the end of menstrual cycle

Comments

I had a csection in 2010, then I had a vbac in 2013. After my second child I noticed a lump that developed above my csection scar. At first it wasn’t that painful and was controlled with birthcontrol. Recently, it has been extremely painful especially during my period and the week following. It hurts so bad to even cough or walk. The lump seems to grow each menstraul cycle and the pain I would describe as a hot stinging sharp pain. I have had appointments with 4 different doctors and a lot of them are saying its just a hernia or scar tissue. I recently found a surgeon who mentioned it could be an endometrioma mass and he has me scheduled to get a ct scan of it and then he wants to remove it. I want to know if removing it would be the best treatment or what should I do? I can’t keep living with this pain anymore.

I’m sorry to hear about your painful experience. It’s sad that so many of us have had our endometrioma mass diagnosed as “hernia” and “scar tissue”. When will doctors be aware and include this diagnostic with any cesarean painful lumps… As the mass gets bigger so does the pain. Surgery is the only way to completely get rid of the mass and pain. Keep me posted and let me know if you have any other question.

Did you have surgery? I have been dealing with the pain for 12 years now… Every doctor I’ve seen has diagnosed me with a hernia, or scar tissue… All I’ve been told is if it is removed it will come back.

Tomorrow marks two years since my abdominal surgery. Since my surgery I’ve had a CT scan and one MRI and there is no re occurrence of the mass nor endo symptoms. The FlexHD mesh has been reinforced by my own tissue and the muscle shows scar tissue growth. Please see another general surgeon for a second opinion. Also you can read many case studies about the surgery at http://www.ncbi.nlm.nih.gov/pubmed/21995169

Omg thank you for posting this! I now know what’s wrong with me and my doctors have no clue. My son is 7 and I felt my lump when he was 3 and my doctors have been sending me here or there and not even running tests. I’m beyond annoyed. It’s to the point where it hurts all the time and during my menstral it’s worse. I’m going to my doctor and telling them thank you I have diagnosed this myself so now just take it out.

I had this exact same thing after my cesarean section in 1992. It was about a year later I was having a burning pain in my lower right side, just above my c-section scar. Being the person I am I ignored this for 2+ years until I couldn’t ignore it anymore. Every period I had it would hurt more, furthermore I was feeling a lump where it hurt. I got myself to the doctor who referred me to Dr Ryan at Virginia Mason in Seattle, Wa.
Dr Ryan is a general surgeon and thought it was one of two things. Either a hernia or as he said, “I have only seen this once before but it could be an endometrial tumor.”
He scheduled me for surgery. There was a tumor in me the size of a baseball. I went home with a surgical drain and I awaited pathology. If I knew then what I know now, I’d be scared of hearing the “C” word because I honestly think now that’s what he thought before the pathology report. It came back fine. It was Iatrogenic Endometriosis.
Now 20 years later when I go through my “prior surgery” list with my doctors and I put down this surgery, they always ask me what I’m talking about. They say, “You mean you had endometriosis? I have to explain exactly what I had. They look perplexed and say, “That’s really rare”
Best of luck to you. Get it fixed and you’ll feel a world better.

I had a mass removed off my abdominal wall almost 2 years ago, 3 years to the date of my c section. 3 doctors diagnosed me with a hernia, when I went into do a consultation with my surgeon he told me his thoughts of it being Endo.
It was removed, I did well until now, ALL my symptoms are back again this time they are much worse. Is it possible for me to have endo other places? I was told by the surgeon it would not come back once the mass was removed from c sec scare? Anyone dealing with this? It’s frustrating

I am literally sitting at my kitchen table crying right now because I have to go to work in less than an hour and the pain is so bad that the slightest pressure hurts. Keeping up with a 2 year old isn’t easy to begin with. Add this sharp, stabbing pain and I am ready to blow my brains out. I have waited and waited to hear from doctors and everyone is just bouncing me around. I finally got an appt with an ob/gyn for tomorrow (thanks to a last minute cancellation). According to your research, I am in the follicular stage so at least they can see how bad it is right now. What can I expect for my next couple of steps?

My tumor on ultrasound measures only 2 cm. To me when I lie on my side and dig in to feel it it feels much longer. I’m curious if they tend to be bigger once they are in to take them out vs what shows up on an ultrasound. Anyone have any experience with this?

I am relieved to know I am indeed sane. I had my son in 2009 and sometime after I noticed a lump and was also told scare tissue. It was not painful so I didn’t question it. After his birth I had an IUD in place so I did not have regular cycles. About 6-9 months ago I started getting pain that has increased. Countless ultrasound appointments and being told there is nothing there were frustrating. I began telling any doctor I saw and my primary felt it during a physical. He ordered a ct scan that made mention of a fibroid tumor and I was referred back to gyn. Again pelvic ultrasound was done and I was told nothing there should be causing the problem. Finally I visit my dermatologist who orders an ultrasound of the mass itself . The radiologist was not sure what the mass was and checked with the ct scan report and referred me back to gyn. I had always been seen by a PA before but was now being seen by a doctor who after the exam felt it was a endometrinoma. She has scheduled a removal surgery for me but states she is unable to tell me what to expect because she won’t be sure until she gets in. That has sent me in search of what other women have experienced so I am so grateful for your stories.

Hi all! Thank god I have found this site! Nearly four years of pain at my scar site and getting worse with every period. Ultrasound showing nothing. had endo since around 16yrs old and I am now 31 with three children by c section. Pain burning sensation on right side of scar and feels like it’s itching ‘inside’. Gp hasn’t got a clue what I’m talking about and really want to be referred to a gynae surgeon again. So fed up but booked app with gp to tell her what I think it is. Fingers crossed I get referred now

I’m waiting for gynae appointment now which is 6th October. My gp agrees its scar endometriosis and in the abdominal wall also. The pain is hard and would say about 3cms but the pain goes way further up when on period and for around 16 days afterwards. The pain is bad enough but the itching sensation is the worst. Hoping they do a laparoscopy. Feel like I’m going crazy!

I just had TWO endometriomas removed on the twenty third of this month. My son was born by c section in 2006 and two years later I also felt a lump. It wasn’t causing any pain so I assumed it was scar tissue since this was my second c section. I then had my third c section in June of 2013 and my ob was going to remove the “scar tissue” except I had to go in for emergency surgery. Needless to say it was not removed. About a year and a half ago I started feeling a burnning sensation and intermittent pain at the site of the mass. I mentioned this to my PCP who said it was scar tissue. And about a year ago I felt another small mass on the other side of my scar that was much more tender so I scheduled an appointment with my ob/gyn he quickly out rulled a hernia and also thought scar tissue. I work at an outpatient Radiology center and insisted that I get an ultrasound of the two masses stressing that I didn’t think scar tissue should grow/shrink around my menstrual or hurt at that. When i had my US the radiologist (board certified in womens imaging) was puzzled because there was blood flow in the masses. I then had a consult with the surgeon who thought that it may be a fibroid. It wasn’t until I was opened up that he really knew what it was. This is 4 doctors that never suspected what these masses in my body really were. Just goes to show that it really isn’t something that doctors suspect during diagnosis. It took 2 years for removal from my first complaint.

Hi! I have been to gp today and she agrees…scar endo! Was in tears when she told me she was referring me to a gynae consultant and could not thank her enough! Thank you so much for posting this as all the symptoms you are all experiencing lead me to go down to the doctor and tell her what I thought it was! Just waiting for hosp app now! Fingers crossed I will be pain free very soon 💃

Hi! Had my surgery on 22nd Feb. Had up and down days since. Just wondered did you experience the worst period pains possible after surgery? I’ve just started only yesterday and taking strong pain killers for the pain. Is this normal? I’m not so sure my period would be affected as the tumour was taken from above my section scar? Any info would be great!

Hi Louise,
I am guessing the pain you are experiencing is from the surgery. Just like with any other surgery you will have pain and it takes time to recover and heal, especially with this surgery. For me it took about two weeks. Are you still experiencing pain? Have you talked to your surgeon about your discomfort?

Hi Ana! The pain is higher up the burning is back! I feel so low and miserable. They couldn’t have got the other one out. Surgeon said before the op he wouldn’t operate again and would be pain management. Feel so helpless now

Symptoms are back. Called consultants secretary yesterday and broke down. I see him again on 22nd March thankfully to get results of pathology. Gonna ask for a total hysterectomy. I’ve had enough of all this pain and misery

My condition started a year after my daughter was born.. it started as lower back pain and then sciatic pain on my left side hip area.. . from there it just progressed and got worse.. at first I thought that maybe a stitch had not disolived because I could feel like a needle scrapping the inside of my lower left abdominal area.. it grew into the size of a pea. Now 4 years I have a mass about the size of an orange.. this thing causes extreme pain .. and I mean extreme.. on the inside it is a sharp intense stabbing pain on the outer skin area, you can’t even touch it.. even the softest shirt feels like the harshest sandpaper rubbing against your skin. I have had ultra sound and x rays done.. pain meds do very little when it is at its worst , which can last between 15 to 20 days starting about 4 days before your menstral cycle.. every month it gets worse. Also you may experince othe symptoms including but not limited to IBS.. .my suggestion if you feel this may be you, keep a journal of your pain and also don’t stop until you get the help you need.. many doctors said everything was normal and that this is normal.. Keep going , find a doctor that will listen .. and don’t wait , cause it will only get worse.. I have lost a lot of time trying to deal with the pain..

This is exactly what I have. I went to my OB several times and finally referred me to a general surgeon who did a ct scan with contrast and determined it was not a stitch that it was endometriosis of the abdominal wall. Right now I am in so much pain even under garments hurt it. The pain is so severe it feels like needles inside poking and scrapping me. My doctor told me it would return and to go ahead with getting pregnant as it should subside. Is this true? Anyone have experience with that?

If you remove the mass with margins, the mass never grows back. While being pregnant the endo mass does stop growing because you no longer are going through that monthly cycle.
I hope this answers your questions.

hi my name is anna and im from the phil. thank you so much for your info i also has this lump that i notice 3 years ago. and all ur comments is a big help for me to understand that im not the only one experiencing it

I am home tonight having come from the ER with pain so sharp & biting in my abdominal wall that even diladud didn’t stop the hurt. I’ve never had a baby, but 2 laparoscopy surgeries & a hysterectomy, all for endometriosis. For 4 years this lump under my incision has become progressively more painful & bigger. I’ve seen GI’s, gyno docs, GP’s & have been told everything from basically “it’s in your head” to “it’s stuck poo” to “I don’t know” Finally got a GI doc to order CT scan. Thinks Endo on small bowel &”says to follow up w/ gyno doc.” Gyno doc appt. is over a month away. 2 weeks later pain suddenly increases &lump feels triple in size so I see GP. He thinks it may be a hernia. I advocate to get an MRI & am supposed to this Monday but…today the pain goes from a solid 7 to a 9. Feels like my flesh is separating inside. Go to ER. New CT scan. No not a hernia but stomach wall endometriomia they think.

I am researching & wide awake at 3am cuz the oxycodone is not doing enough for the pain & there is not a single position I can lay in w/out feeling gravity pull at this thing & make my belly ache. I was sent home & told to call the general surgeon Monday, 2 days away. I feel like I should still get that MRI. All I know is I want this thing OUT OF ME & I feel like I have been abandoned by the institution of medicine. I feel like all of us w/ this have. I pray for all of our healing & for doctors to look at every possibility before just dismissing us. Yes perhaps we are hysterical, because they have literally made us that way due to these surgeries.

Sadly this is happening to us in 2015! This endometrium tissue transfer is happening more often than they want to recognize. Scar endometrioma is not a natural occurrence and it should be one considered as one of the diagnostics when problems arise postpartum cesarean. During the time I was going through this, I was at the ER about every other month, they would just send me home with an ice pack. Muscle strains. They treated me like I was some type of “druggies”. They ignored my symptoms and my mass. For sure they marked my name / account with a red dot. They never took that red dot off my account even when they wore wrong all that time and misdiagnosed me.
Things need to change and all of us need to demand that. I am just happy that at least I can communicate with all of you here. I no longer feel alone.

Im so happy I found this page Im going into surgery on Friday for a possible endometriosis mass removal. Its 2cm x 1cm not huge at all but the pain is horrible when it does hurt. What can I expect after surgery? Pain? Recovery time? Any advice?

This is me!
Pain (burning, sore to touch, and sometimes for no reason at all) started about 3 months ago. Very acute mid-cycle when ovulating. My lower back and hips have been hurting for 18 months. Related?
I found your site while waiting for further imaging prescribed by my gyn. I was sure this pertained to me. I am so grateful that the dr who read my pelvic ultrasound came to this conclusion on her own, telling me it is so rare, they have only seen it once before. So I’m off for a surgical consult next week. The mass is 2.3cm and is on the right side of my c-section scar. But I think it’s not from my c-section (2009), but rather an emergency uterine repair from 2006 that followed a very traumatic induced delivery at 20-weeks that ended with a D&C due to placenta not detaching, which ended with a ruptured uterus. The repair took several hours and I lost a lot of blood. Looking back, it makes sense that uterus cells could have found their way outside the uterus. The mass is outside the muscle wall and just under the skin.
I’d love to hear from anyone who has had surgery (especially that sounds like mine, possibly not very invasive), who can tell me what to expect. Any chance it might be done as outpatient? Any additional scar tissue removed (that would be great!)? How long was recovery? I will likely be out of pocket for this, so out-patient seems more economical if an option. Thank you all for sharing your stories. You gave me everything I needed to know that I was no crazy. I wonder if the pain I’ve been having

Hi ,
So glad I found this ! I had my 2nd csection 2 years ago . 6 months ago I felt a lump in my lower ab wall , pea size . Didn’t hurt but I quickly went to the dr in fear of cancer . He sent me for an US they should a small 2cm mass but was inconclusive of anything else . My dr said to just carry on and not stress about it . A month later the terrible soreness and pain started with the lump . I went back into my dr he did another U.S. That should no change and he said he didn’t know what it was . I went to my GYN he said scat tissue and he did a laporscopy , which showed nothing . I’m in agony with the pain now . I can’t wear tighter pants because it hurts too bad . I finally went to see a General surgeon this week and his 1st thing out of his mouth was the endo. He said he can send me for a CT scan or just do the surgery and see . I’m torn on what steps I should do now . I’ve had 3 ct done in the past of my pelvic area ( 2 because they thought they nicked my bladder ) I don’t want to be exposed to more radiation . Should I just go ahead with the surgery and skip the CT? How long is the recovery ?

I would get another CT scan to make sure the surgeon has a clear vision on what they are dealing with during your surgery. Everyone has a different recovery depending on the location of the mass, size, etc…
One – Two weeks you should be back to feeling great and at full capacity. Please check with your surgeon, he should be able to tell you on the recovery time.

Thank you! Omg thank you! I have been suffering from this since 2011. Moved out of state after my second C-section. First I found it was small, the size of a pea or pebble, and every OB that I have seen tells me it’s a hernia, and “in my head” that it hurts only during menstruation like I say. Now, 4 years later it’s the size of a medium bouncy ball! Thank you! I can’t wait to see my OB and show them this. Thank you!!!!!!!!

I am happy you found the website. Funny how all doctors have the same excuses instead of considering this as a diagnostic. Just like you, I was told so many diagnostics that didn’t make sense with my extreme pain and a growing lump. I even got sent to a plastic surgeon for my lump as my doctor referred to it as “stubborn fat”. Keep in mind that no doctors will go on record and admit that this endo mass is the result of endometrium tissue transfer at your c-section procedure. Just make sure you get treated because as you can see the lump grows and the pain gets worse.

Ana I would.like.to ask you a question…how.is the mesh working for you?? I am really nervous about my upcoming surgery and I am not sure what to expect.. they are going to do a complete hysterectomy along with removing the mass except for one ovary.. thanks

I too have been diagnosed with an abdominal wall endometrioma (AWE) resulting from a cesarean section that was performed during my only pregnancy back in 2011. I started reporting my symptoms to my OB-GYN back in November 2013, but was ignored… (“It’s a saroma, we’ll remove it during your next c-section.”) I finally decided to change doctors and luckily my new GYN immediately diagnosed it as an AWE.

I’ve been through ultrasound, intra-ultrasound, MRI, and uterine biopsy (the GYN was concerned over the thick uterine lining that was showing on the ultrasound/MRI, however, I have had extremely heavy periods after my daughter’s birth, and the doctor ruled out any chance of uterine cancer with the biopsy)…

Meeting with a specialized surgeon next week and very nervous about recovery, as local surgeons have refused to touch it — the endometrioma appears to be invading the abdominal muscle and will most likely require a large portion of mesh. Also have a D&C scheduled for two weeks to clear out uterine polyps that were found during the uterine biopsy. (Not sure if the two are connected — never had any gynecological issues prior to my c-section.)

Thank you for sharing your story with us. I am glad you changed doctors and had this diagnose. Just like you my OBG doctor ignored my lump and symptoms for three years. The surgeon had to cut off 8cm of my left abdominal rectus muscle and used FlexHD mesh to repair and reinforce the hollow. I haven’t had any problems with the mesh. So, I would recommend the FlexHD mesh. How much of your muscle are they needing to cut off?
Good luck and keep us posted!

Hi Ana! Saw gynae consultant this week and mri does suggest endo in the right rectus abdominus and will be major surgery for me! I was so happy to be diagnosed, he thought I had gone mad!!! All the years I have known and it’s finally there in black and white. Currently measuring 4×3. His having a meeting as he feels general surgeons maybe required to do this but he also said its difficult to say whether I will be out of pain afterwards. I’ve told him to go ahead and try. Can’t continue to live with the misery and have no quality of life while I am like this! Will keep everyone updated! A special thank you to you, you are a god send to the ladies on here offering support and being able to talk to others who actually know what we are all going through! Love to you all and merry Christmas!! X

Hi, just wondering of this is what I have I had a section just over two years ago and had no pain or lump was fine but a couple days ago I found a small tender lump it hurts to touch it an it’s hard like a stone right at the end of my scar I fort it could be a hernia so made an app at the docs he’s told me it’s just fatty tissue but I’m not convinced as it shuldnt be hurting if it’s just fatty tissue is this how everyone’s started??? Thanks xxx

The pain I can only describe as life changing.. the ripping and tearing and pulling …it’s can be horrific.. it’s started off so small , now about the size of an orange .. after 40 or 50 doctors and stupid obgyn, I finally got one that would listen and help.me.. I am almost 40 years old.. and I will promise you one thing this doesnt get better.. it only gets worsw.. I went from being a certified weight trainer to some days I can barely move.. this thing has robbed me of precious time with my child and family.. if anyone ever starts to feels a pea size lump or even if you feel.some horrible stabbing pains please get to a good doctor, especially if you would.like to have more children.. this is it for me , I can’t have any more.. I have been blessed with one and for that I am grateful.. the quicker you tell your doctor what is going on the better the chances of you being able to have another child.. Dont wait, do t try to keep pushing through.. get some help , I can no longer have another child due to all the complications this has caused .. yes I wanted another child , at least I did when this first was noticed almost 5 years ago.. now I can’t and there is nothing I can do about it now.. just don’t let anyone tell you any different , or down play your.symptoms when you feel.in your heart and soul that something isn’t right..

Ana , I just wanted to say thank you .. I was at my breaking point..I hit my knees and asked God to help me and help guide me to an answer.. when I typed in all my symptoms your post came up.. surgery is just a week before Christmas .. because I run such I high risk for it to return , I requested that everything including female organs be removed except for one ovary.. if you have any suggestions please message back.. I would like your input please.

Hello.
So glad ive came across this sight.
Ive had to c-sections one in 2007 and my 2nd in 2012. For the last 11 months i have had a small hard very painful lump appear just above my c-section scar, six trips to the doctor to be told scar tissue, when i was finally sent to see another doctor in the same surgery he said i think its a cyst so il refer for ultrasound, my ultasound report came back and they have said i have ectopic endometriosis. And i have to be referred to gyno, im so scared. In my report it states i have a heterogenous low echo lesion with some vascularity noted within it. What does this even mean? And how will they remove it?

Vascularity means blood flow, which normal. To put in a simple words; your endo mass is an organ which is composed by endometrium tissue and requires blood to live.
Have you meet with a general surgeon yet? They should be able to give you an exact surgery plan because everyone situation is different….
let me know if you have any other question I can help with…

Ive had my first gyno appointment and to be honest they didnt even really explain much to me, just that i have an endometerioma its attached to the cesarian scar and attached to my rectus abdominus? They scheduled me for surgery for the 11th april. I dont know how long the surgery is didnt explain much to me at all. He just said because the endometrioma is attached to my muscle that hes worried about me ending up with a hernia! I hope they see me again before my op. I know im having a general so there putting me to sleep. I want to know if it will be a big scar and how long il be in for? Or if its day surgery. Its agony the lump feels like its burning. All i can explain it like is that it wants to pop! 😕.
How was your op and how long was you in for?
Thanks
Sadie xx

How big is your endo mass? I had a two weeks recovery with a 8 cm removed of my abdominal muscle removed. Long term issues for me is my permanent hernia due to the muscle portion missing. I had one year physical therapy which helped me strengthen my core. Now I feel great. I’ve had no problems with my FlexHD mesh, I would recommend it.
Remember that everyone’s recovery is different.

On my ultrasound report it just said that me mass was 1/7cm so im guessing its between that size and that they are not 100% sure themselves. Was youre hernia never corrected? He said i will have more surgery if i end up with a hernia? Are there incisions like a cesarian incision or alot smaller?

My incision is at the exact location and size as the c-section scar. A permanent herniated abdomen like what I have is not fixable. There is no transplant or muscle regrowth medically possible right now. An Abdomen rectus muscle acts as your intestines compression, not having 8cm of my muscle there my intestine stick out. Mesh doesn’t contract like muscle does. I have not had any problems with my mesh but if I do that’s when a surgery is done.

I am so glad I came across your blog. I have been dealing with this pain since 2012. At first I was told it was just scar tissue and to just massage it. I have been to back and forth to the doctors trying to figure out what is wrong with me. Last week, I went to the er because the pain was unbearable and I was also experiencing chills. Of course they couldn’t do anything but the doctor did admit that she didn’t know what it was and sent me to my regular doctor with a list of test to run. I will have my first CT scan on Monday. I would like to know do more lumps form because beside the large lump I feel a smaller one former.

Hi Ladys, had my c section in 2007 after a year or so I started to feel a small lump went to obgyn which told me scar tissue. I had very mild pain with each menstrual cycle back then, fast foward to October 2015 woke up one morning with the WORST pain I have ever felt in my life it felt like a stabbing knife in my right illiac fossa region, went to ER Drs thought appendics and peptic ulcer.. test came back negative was sent home the next day, pain got worse in the next days my belly started swelling and I could not stand at all, went to ob gyn he diagnosed me with a overian cyst and removed it with laprascopy the following day. Gist as I thought my pain is gone and I can live normally again it hits me 3 days after surgery I was devastated cus nobody understands when I explain the pain location.. went to another dr that referred me for CT scan with contrast came back 2cm leision not and borders not well formed.. went to obgyn with results he said ‘we should take it out some time’ I left it there and tried to go on with my life and get used to the pain until I found out im pregnant wich turned out to be a chemical and had to go to a new obgyn (mine was away on holiday) this dr said its defenitly scar tissue until he saw the CT scan report he sent my GP a letter that he wants to remove it and get it sent away, please help me my stress levels are sky high.. why does he want it sent away?.and why send a letter to my GP? please let me know what to expect from surgery.. as I already went trough surgery for nothing and have a bad reaction to anestetic, how do they perform surgery? my obgyn’s secretary said its the same as C-section.

Thank you for sharing your story with us. Sorry to hear about all you mishaps.
To remove my scar endo mass; I had my surgery through the c-section scar with a general anesthesia.
Have you meet with a general surgeon?

Wow! Can’t tell u how grateful I am to have come across this page. I have been in sever pain for the past 1yr after the birth of my son 3yrs ago! My doctor said “it was all in my head” and I had nothing to worry about. But I knew the pain and d coincidence of having it being so painful during my periods were not in my head! I thought I was going crazy cause it didn’t seem as though what I was complaining about was a medical condition until now! So grateful! And I feel a bit better knowing am not just crying wolf.

I noticed a mass in my lower left abdomen last summer and started having a lot of the associated symptoms listed, I told my obgyn about at my annual checkup and he felt around and immediately told me that it was incisional endometriosis, and how I got it; and he was the one who performed my sections. So there are doctors out there who can and will own up to the fact that sometimes things happen. Sad that they seem to be few and far between. He gave me two options, I could schedule surgery to have it taken out or if I felt I could deal until I got pregnant again he’d do it at my next csection. So far I’ve done well but it’s definitely getting progressively worse but I love my obgyn and his upfront honesty.

This is great. Unfortunately, these things do happen. I certainly don’t ‘blame’ my surgeon as there were so many complications with my daughters arrival, she was 2 months early and very small for gestation so I’m just happy she’s here and well 😊

That’s great that he can fix it when you have another c section, I was hoping this would be the case- I would like to have another baby in the near future and if I’m going to go through the recovery of surgery it’d make sense to do it at the time of c section delivery as I’m unfortunately unable to give birth vaginally. Thanks for info from your obgyn consultant 😊

Has anyone heard that pregnancy will reduce this pain significantly ( after the birth)? I’ve read a few things that lead me to believe it will decrease even after. I am so afraid of the after effects of surgery, so I’d rather not do it if there is some other way to alleviate the pain.

During pregnancy your endo mass will stop growing. After you give birth it will continue growing. Surgery is the only way to get rid of it. I have no problems, no pain after my surgery.
How big is your mass?

Hi Ana, as so many others have said, thank you so much for sharing your story and such invaluable information. I have had two cesarean sections the last one being 8 years ago now. I felt a lump on my scar about a year after my daughter was born. I went straight to the doctors fearing the worst and was relieved to be told it was just scar tissue. I was sent for an scan and found out it was 1 and a half by 2and a half cm in size.The outcome was leave I well alone as removal would cause reaccurance of more scar tissue. Over the years the symptoms increased always around my cycle and I was always sent away fron the doctors with the same response. I have so many of the symptoms you describe. Mainly pain ( like a hot poker) cystic acne, itching and many more. After finding your website I knew this was the answer and finally found a doctor who listened. I have an appointment with a gynaecologist this week! After all these years I’m finally on the right path. Thank you x

Same issues here, first noticed the lump
I usually have nausea and some gastrointestinal issues during my period, and I have inflammation all the way up my side and back, aside from the intense pain
After your story I’m even more scared to have the surgery. My Gyn recommended having a baby first and then removing it at the next C-Section. I had hoped by now that I would have done so, but circumstances have prevented that up to now. I hope I can hold out until then, it’s only getting worse each month.

I had my surgery in 2013 and I am happy I did, I no longer have to experience that extreme monthly pain. Surgery is the only way to completely stop this mass from growing and putting an end your pain.
Remember as the mass slowly grows, your pain will get worst.

I am a little floored by all of the above comments. I have been going to the ER consistently over the past year for pain around my incision. I’ve been told “it’s a cyst”, “it’s in your head”, and even down to “we have no idea”. Finally got a follow-up with a completely different OB (after I just started bleeding randomly, 3 days after my cycle had ended) and he said that he thought I had endometriosis in my incision. He also told me that it was “incredibly rare” and “almost never happened”. He had an ultrasound order to confirm, but he kept insisting that it was super rare. I started doing research and I am now seeing that it isn’t as rare as he would like to act like it is. My husband noticed the mass growing before the doctor did.

I’m terrified of undergoing more surgery, but would love to not be in pain anymore.

An endo mass in the at incision site is not as rare, it’s just often misdiagnosed. Your endo mass slowly grows, the pain will get worst with time.
Surgery is the only way to completely stop this mass from growing and putting an end your pain. Other treatments, might alleviate the pain and slow the growth (if it works) but keep in mind treatments to come with other risks.
I had my surgery in 2013 and I am happy I did, I no longer have to experience that extreme monthly pain.

Hi, I had a hysterectomy in September due to server endometriosis and they found a mass in my abdomen measuring 9cm. It is resting between my rectum and right colon. Gyn doc says he’s not sure what it is and called a general surgeon in during my LAVH. No luck there either they did the hysterectomy and tried to remove the mass from below. Well, to make a long story short, they didn’t remove the mass and I go to my family doctor tomorrow to try and find out what this mass is and find a surgeon who can remove it. Question is, has anyone every heard of endometrial mass where mine is located?? Worried

I have had two c-section (2008 and 2011 with twins). About 2 years after my last one I noticed a sharp pain on the right side of my scar while on my menstrual cycle. I didn’t see a lump, but when I pressed on it could feel a lump that was very sensitive and painful to touch. I made an appointment with my ob and she said if it is painful during my period then we should just stop them using birth control. I was not happy with this response, so after it got more painful I made an appointment with another doctor in the same practice. I wasn’t on my period when I saw him, he couldn’t feel the lump and it wasn’t very painful when he touched the area. But after describing what I felt and experienced he said he had only seen one case of it in his 20 years of practice, but is confident it is endometriosis caused from my last c-section. He said he could do the surgery and would like to do it while I am on my period, so that if it is getting larger at that time it will make it easier to locate and remove it all. That was almost a year ago. I have put it off because I had just started a new job and couldn’t take time off for the surgery/recovery. I plan on having the surgery this summer to get it taken care of. I have a few questions-has anyone else had their ob do the surgery to remove it? Did anyone else’s doctor recommend they should be on their period during the surgery? And he didn’t mention Ct scan or mri to get a visual of it since he knew what he was looking for… should I request to have one done prior to surgery? Thanks for the help!

I am guessing your surgeon has plenty of experience with this and feels sure that your lump is an endo mass. Having your surgery during your menstrual period is due to the changes in mass size during a woman’s menstrual cycle.

Hi Ladies! So I’ve been misdiagnosed for 3 years and the pain has gotten so bad, it’s consumed my life. I finally found a doctor familiar with this- thank god!!! I have a 2.5 cm round mass attached to fascia on csection scar. I am planning surgery for removal and most likely insert mesh. Ana, can you tell me about your recovery? My doctor imagines that he’ll have to take out plenty of margin to insure non-recurrounce. I’m wondering how much work I’ll miss and long term issues. Thanks k you so much for this site

Everyone’s recovery is different. I had a two weeks recovery with a 8 cm removed of my abdominal muscle removed. Long term issues for me is my permanent hernia due to the muscle portion missing.
Your 2.5cm mass attached to your fascia you should not give any long term issues and your recovery should be fast.

In 2013 I had a c section, in Jan 2015 I noticed a lump and had a scan, they told me it was a very small hernia, carried on with life then in November 2015 the pain got worse; noticably worse around the time of my period, my gp referrered Mr for another avant-garde around the time my period was due, but my period was late- my cycle is shocking since having my daughter. The consultant doing the scan pushed around for a long time and saw on my notes I’d been told it was an inguinal hernia, he then said that it’s not even in the right place to be an inguinal hernia, it’s either incisional hernia through c section or its trapped endometrial tissue, he said he only knows this as he’s a gynaecology consultant so it’s his speciality, he told me to carry on and that if it gets worse go to the gp for a referral for an mri- the pain is getting g worse by far, I have about 5-7 days a month where the pain subsides a little, although it still hurts. My hormones are all over the place, and my period is very irregular. Does anyone know the treatment of this? I went on the pill about a year after having my daughter and it really didn’t agree with me! I was having severe sweats constantly, I spent the whole time crying and feeling extremely depressed, it was awful and I vowed I would never ever go back on it or use any other forms of contraceptive, other than condoms. Can anyone help?

Sorry about all you mishaps.
Surgery is the only way to completely stop this mass from growing and putting an end your pain. Other treatments, might alleviate the pain and slow the growth (if it works) but keep in mind treatments to come with other risks.
I had my surgery in 2013 and I am happy I did, I no longer have to experience that extreme monthly pain.

Hello, I think I have this after reading your website tonight as I was desperate to figure out why I feel so awful. I feel very lumpy under my c section scar( I’ve had 2, one in 2010, one in 2012). I stopped taking the pill in October and since then each month I have a period for a couple of weeks afterwards I’m in terrible pain. My periods are a lot heavier now. I suffered with ibs until my pregnancies and then it went away pretty much but now my ibs is dreadful especially during and after period…. Just had a colonoscopy which was negative for ibd. I’ve been to my dr in the past and told him my scar feels sore, lumpy, hurts when I cough or sneeze he just said its fine not to worry but that’s okay for him… He’s not in agony. Do you think my symptoms sound like yours? Also had to have a mammogram as I was getting weird breast pain… This was also negative. I keep getting urine infections too which have blood in them sometimes. Im so so fed up… Im 38 with two little girls and I don’t want to feel like this.

Your symptoms sound a lot like mine. I had so many tests and everything came back negative. None of the doctors ever gave me a CT scan with contrast in the abdominal wall. They scanned everything other than my lump. Beacuse my lump was just “scar tissue” “stubborn fat” and all my pain was just in my head because all tests i did wore negative. I had two mammogram, my breast wore tender, hard and it would increase two sizes during my menstrual. Guess what now that I no longer have that endo mass, I have no more problems with my breast… Or any other problems that I had during those 3 years.

CT scan with contrast of the abdominal wall followed by a biopsy should give you a diagnostic.

Thank you for sharing your story! I had an emergency c section April 2013 and recovery was quite easy, no complaints there. Around November 2015 I started having slight pains on the right side of my c section around my period, I went to see my gyne who said it might be endo, but when she checked it she said it was too small to do anything about at this stage. Now it seems the pain is getting stronger and this month the pain continued even beyond my period (albeit much less pain); also I have noticed some spotting 5 days after my period. Could this be related? I am trying to have another baby and I’m not sure if that affects it negatively and makes it harder? Would it make sense to remove the endo when/if I have another baby? I am scared the new scar might cause another one to form!

Sorry to hear… You could have your endo mass removed during c-section. Surgeon should remove the mass with margins to insure no recurrence. Your incision endo mass should not effect you getting pregnant.

Thank you thank you thank you!!! I’m current on day 2 of my period and laid up on my couch with an ice pack on my stomach to try to help with pain. I had my daughter by c-section 11 years ago and have been in pain for as long as I can remember . I have a huge knot on my lower left side right at my scar tissue. It sore to touch all the time but when I have my period …. OH MY!!! I can barely stand up straight when I walk … It burns and feels like my uterus is ripping apart and on fire…. It’s horrible!! I went to my gyn and he said scar tissue so all these years I have been living with this and it could possibly be preventable?? 😭😭😭 this girl is making an appointment with another gyn and specifically mentioning this…. I have all of the symptoms… I’m almost in tears thinking there can actually be a solution …

Hi, my name is Emily and I was diagnosed with Endometriosis since last year. Since last year, I have had two lumps appear on my lower stomach.

First, I noticed a lump on the right side of my stomach underneath the scar.

Second, I noticed a lump on the left side o my stomach underneath my scar. Its hard. I’ve been having intense lower back pain (will get very sharp) and its painful to lift anything heavy and my lower stomach is constantly killing me.

I have a doctors appointment tomorrow and I am just a bundle of nerves. I’ve had the lump looked at once before and they told me the depot shot should shrink it and it has not and now I have not one lump but two!

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